A brighter future for our Down syndrome babies
As society begins to embrace integration, people with Down's are able to cast off the isolating, institutionalised image that has clung to them for far too long
Meet the gang: Conor, Kathy, Wynnie, Caoimhe and Ellie. After a tough start, Kathy now has high hopes for her youngest daughter
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Late last year, in the midst of all the Christmas consumerism madness, a feel-good headline caught my eye -- 'Births with Down syndrome increase'. It seems that despite widespread screening programmes, there are more British children being born with Down syndrome than before its introduction, 20 years ago.
One of the main reasons given for this amazing turnaround is that Down syndrome today carries less of a stigma than in previous decades. Around 25pc of parents given a pre-natal diagnosis said the fact they knew people with Down syndrome was a reason they decided to continue with the pregnancy, while 35pc said they felt life had improved for people with the condition.
As society begins to embrace integration, people with Down's are able to cast off the isolating, institutionalised image that has clung to them for too long.
Carol Boys, chief executive of the UK's Down syndrome Association, which conducted the research, said: "When I and others had our babies it was a very different world --those with Down syndrome were treated very differently. Now there is much greater inclusion and acceptance, with mainstream education having a huge role.
"We think this plays a part in the decisions parents make -- there's even been a baby with Down syndrome on EastEnders."
When my daughter Caoimhe, who has Down syndrome, was born five-and-a-half years ago, I was overwhelmed with a myriad of thoughts and feelings about her diagnosis. Fear, shock, anger, tenderness all collided in an explosion of love. Somewhere in this vortex lay something else; something unsavoury, from the playground of childhood which for a long time I refused to put a name to: embarrassment.
As she laid, a tiny newborn in my arms, my mind would project forwards 10 years, and I would see her lumbering round an athletics track at sports day being laughed at by her peers; or I would be plagued with snapshots of her as an overweight teenager, clinging to my aged, wrinkled hand.
The origins of these images, I knew, lay in my childhood. I grew up in a small village in the north of England where a 'home for the mentally handicapped' lay on the periphery, a large white building belching smoke from a tall central chimney.
Discomfort
Inside the grounds there were the 'patients' who elicited in me a feeling of intense discomfort; from their lack of speech to their appearance, they looked unloved and uncared for, dressed in ill-fitting unfashionable apparel with functional haircuts. I didn't want this for my child.
And I didn't want it for myself. In my village there was a lady who had a son with Down syndrome who raised him at home. I don't remember this being seen as a normal or brave thing to do considering the era. Instead her son was talked about as being a burden on the family; her name was always prefixed with the adjective "poor". Any mention of her son, referred to as a "mongol", was immediately followed with the statement "it's a shame".
Perhaps it was my imagination, but this woman seemed to drift on the outskirts of village life; uncomfortably tolerated but rarely included, a bit like someone with a criminal record.
No wonder then, when it happened to me I was terrified. Caoimhe, I felt, was my stigma, one I must bear alone. She was the outward sign of internal biological turmoil, a mistake, a product of a union less than perfect. She was the placard which declared our family defective and me, a failure. For I had produced something which strikes at the heart of society's two most valued attributes: looks and intelligence.
I didn't want to be the mother of a child with Down syndrome. For a start, at 36, I didn't feel old enough. "You don't look like such a mother," one friend said, reassuringly, which made me ask: "What does such a mother look like?" "Grey," she said. "Sensible. Elasticised."
I unearthed a book, a photographic essay of reproduction, and noted that my edition was published in 1993 -- not that long ago. There at the back, behind the sun-tanned youthful couples cavorting on beaches with desire in their eyes and young first-time parents with their perfect babies is a section on chromosome abnormalities.
These illustrations were different. There was a photo of a mother hugging her naked toddler. The mother's beige hair was rigorously coiffed, she wears a pair of yellow slacks (remember those) and a wistful expression on her ageing, downturned face. The message is clear: she is old, she is sad and about as sexual as a leaking bucket.
Thankfully, along with all these negative images, there was one I clung to as a drowning person does to a life raft. In my eldest daughter Ellie's class there had been a boy with Down's. He and his mother were a lifetime away from the distressing figures of my childhood. At school pick-up time she was well-dressed and smiling. She drove a funky vintage car and carried an impressive range of handbags. There did not appear to be anything 'poor' about her. And when Ellie put her son's name on her birthday invitation list I made a mental leap of learning: if Down syndrome could comfortably coexist in her consciousness, it could in mine.
Hope
In the last five years, of course, I have met many mothers and their children who buck the outdated images of Down syndrome. Since Caoimhe's diagnosis I see the world in sharper focus and people who were invisible before now catch my attention.
I see young mothers, older mothers, some coping easily, others with difficulty. But at least I do see them, they are not mere shadows cast aside from the centre-stage drama, to be talked about in whispers.
As for Caoimhe, my confidence grows with each step she takes. She is striding into a future which promises to be fairly independent of me. When she was born I became obsessed about earning money to keep her in adulthood but as she grows I see that maybe, just maybe, she may do OK on her own.
At five-and-a-half she has just started ballet lessons, is learning to swim and shows a talent for music. No one knows what the future brings but my fantasies are becoming lighter, more fun-filled as she slowly reveals the truth of who she is.
Where once I saw her shuffling along as an adult holding my hand, now I see her on the stage, living in a shared house, holding down a job, having fun, loving life. I am daring to dream of her freedom and mine.
And why not? I see actors with Down syndrome winning BAFTAs; I see people with Down's becoming accomplished performance artists and vocal advocates for the condition. I have read books by people with Down's, heard music, seen art exhibitions and photo galleries filled with snapshots a million light years away from the mental ones from my childhood.
For me, the birth of Caoimhe put to death those old institutionalised images and marked the beginning of a new and exciting journey.
Award-winning journalist Kathy Evans and her partner spent months agonising over whether to have a third child. Then, at 35, Kathy decided it was now or never. When Caoimhe was born there was nothing to suggest that anything was wrong. The following day a midwife told Kathy her baby had Down syndrome. In her book Tuesday's Child, published this Friday, Kathy charts the journey through shock, anger, and grief to acceptance. After a stint living in Holywood, Co Down, Kathy recently returned to Melbourne where she lives with her partner and their three children.
- Kathy Evans
